1 IN 26 AMERICANS
DEVELOP EPILEPSY

Epilepsy & SUDEP

Helpful Resources

In search of information pertinent to addressing epilepsy, SUDEP and its related issues, the Danny Did Foundation engages physicians and researchers in the fields of neurology and epileptology, meets with medical technology companies, and collaborates with epilepsy organizations. Below are resources and organizations that provide beneficial information to patients and caregivers of those who suffer from epilepsy. You can find more information on Devices and Technology here.

The printed form of this publication is distributed to hospitals, epilepsy centers, pediatricians offices, and epilepsy organizations across the United States and beyond. To request copies of this brochure for your events, group, hospital, doctor’s office, family, or community, please email Mary Duffy at mduffy@dannydid.org. To see this brochure in Spanish, click here.

For Students and Schools

Danny Did Seizure Safety Quiz: Share with your classroom or a youth group to spread basic but critical understanding about seizures and epilepsy.

Additional Resources

Alerting Devices: Considering an alert device? Read these five steps to help guide your selection of the system that will work best for you.

Patient Education Materials on SUDEP: Danny Did co-created materials with the Child Neurology Foundation and the Epilepsy Foundation SUDEP Institute that help to access SUDEP risk level. We encourage a conversation with your neurologist to determine whether the low risk or high risk SUDEP information sheet is most applicable to you or your loved one. These materials are available in both English and Spanish.

The Ketogenic Diet: My Keto Planner: The ketogenic diet is a high-fat, no sugar, low-carbohydrate diet that is used to manage epilepsy in patients who do not respond to medication. It was designed to mimic the metabolic state of fasting, where the body burns body fat for fuel in the absence of its preferred energy source, carbohydrate. Like devices, this diet is another area of treatment to ask your doctor about. My Keto Planner is a free online resource where where patients and parents can find new recipes and meals for the ketogenic diet, and gain inspiration from other parents who are using the diet. Free registration is required. My Keto Planner is also accessible as a mobile app for added flexibility.

For general information on ketogenic therapies, visit the website of The Charlie Foundation. To watch a video that gives an overview of the diet from Dr. Jeff Buchhalter, click here.

Infantile Spasms: Infantile spasms (IS) is a rare seizure disorder that occurs in young children, usually under one year of age. The average age of onset is around four months, but some children may experience spasms as early as one month. IS often has a very subtle appearance, so it is difficult for parents to recognize that it is a serious problem. Receiving treatment for IS as early as possible is extremely important. Watch this 2-minute video to see and learn about IS. For more information, visit the Child Neurology Foundation.

Child Health Improvement through Computer Automation (CHICA) initiative: Partnering with the Child Neurology Foundation, Digital Health Solutions, Inc., Greenwich Biosciences and The SUDEP Institute, Danny Did contributed to a pilot project that used a high-tech tool to automatically generate SUDEP risk screening during routine primary pediatric care visits. Preliminary results showed that after starting CHICA with the SUDEP module, the number of caregivers who reported discussing SUDEP with their doctor more than doubled from 21% to 46%. Learn more about CHICA and its future expansion here.

Bereavement Support

The SUDEP Institute - program run by the Epilepsy Foundation - offers a range of support and educational services for families who are living with epilepsy, as well as counseling and support for families who have lost a loved one to epilepsy. For information on bereavement support, visit this webpage, or email tfstanton@dannydid.org. The SUDEP Institute unites leading epilepsy organizations - including the Danny Did Foundation - to promote information sharing and facilitate collaboration around the most common cause of death in epilepsy.

The SUDEP Institute offers a SUDEP hotline that is staffed by professionals who lend crisis support. That number is 800-332-1000.

For families in the United Kingdom, SUDEP Action is a leading advocacy organization that offers support for bereaved families and for those who are living with epilepsy.

Other

A Babysitter's Guide to Epilepsy: This two-page form outlines important information if you're a babysitter, or if you're a parent of a child with epilepsy who uses babysitters.